BRCA Positive?

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MandyByrd
MandyByrd Member Posts: 1
edited June 2014 in High Risk for Breast Cancer

I was diagnosed last week with DCIS and my doctor wants me to have a lumpectomy and radiation.  But my family has a strong history of breast and ovarian cancer and I'm going for the genetic testing.  I've heard that the radiation makes it harder to have a mastectomy because of the scar tissue.  My sister had endometriosis.  My mother has had breast cancer three times, ovarian cancer once (at age 40), cervical cancer once, and endometriosis.  My grandmother was worried about getting ovarian cancer but died in a car accident at 42 yrs old.  My great-grandmother died of ovarian cancer at 42 yrs old.  This is all straight down the female line.  What are the chances that I'm NOT BRCA positive?  Should I wait to have surgery and radiation until the genetic tests come back?  I'm only 36 and I had to fight my doctors and insurance to get them to do breast and pelvic screenings in the first place.  This feels horribly unfair and I have a feeling I'm going to end up with a bilateral mastectomy and possibly a historectomy when it's all done.    Is that what is recommended with a strong family history and a positive BRCA test?  I can't find information on factoring in family history into your risk for recurrence.

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  • hi5
    hi5 Member Posts: 374
    edited August 2008

    Hi Mandy:

    I don't know how rads will affect your mastectomy.  I had bilateral mastectomy , with reconstruction, because of strong family history... I am the 3rd of 4 sis to get bc. After  I was dx'ed the 2nd sis got the DNA testing done and tested brca+, I tested brca+ to and all our daughters did as well... the younger ones had prophylactic mast and reconstruction and my daughter and myself had ooph and hyster.

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  • cmb35
    cmb35 Member Posts: 1,106
    edited August 2008

    Mandy,

    I didn't know about my strong family history, so didn't have genetic testing until 2 years after my treatment (lump, chemo, rads.) I wish I had known, and pushed for testing, because I am BRCA+, and I DEFINITELY would have done a double mast (with or without reconstruction, I'm not sure) instead of the lump and rad. I'm left now in the position of having to decide whether or not to do a proph bilateral mast, and whether or not to do reconstruction knowing I'm not the best candidate due to the radiation, without looking at a cancer dx right now (I'm NED), and let me tell you it's not an easy decision.

    I think that for many doctors, the priority is to conserve the breast. And that's great, as long as you never have another cancer and never need to do reconstruction. I would absolutely wait for the results of the genetic testing, and then make a decision about how to proceed. There are other women who are much more informed than I am, and I'm sure they'll chime in, but that's my personal opinion.

    Good luck and hang in there!

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  • Beesie
    Beesie Member Posts: 12,240
    edited August 2008

    Mandy,

    With DCIS you have a lot of time to make your decisions.  DCIS is non-invasive and usually very slow growing, so taking an extra month or more will not be a problem.  Given that, and given your family history, I'd recommend that you wait for the genetic test results before you have the surgery.  If you are in the U.S., it will only take about 2-3 weeks to get your results after you have the blood test done. If you are in another country, it may take longer but usually there are ways to expedite the results if you are waiting for surgery.

    With your family history and since you've now been diagnosed at the young age of 36, the odds are probably fairly high that your breast cancer is genetic. Still, you never know.  About 85% of breast cancer cases are not genetic and even if the BRCA genetic mutation is in your family and your mother has it, there is only a 50% chance that you inherited it.  Add to that the fact that DCIS is being diagnosed more and more often these days in younger women. 

    For more information about the BRCA genetic mutations and what they mean to your risk, take a look at this website, which provides a good summary.  You'll see that there is a difference depending on whether one is BRCA1 or BRCA2 positive, and even within those genes, there are different ranges of risk.  http://cancer.stanford.edu/information/geneticsAndCancer/types/herbocs/

    And here is a link to a website that is specifically for those who have genetic breast or ovarian cancer.  You'll get lots of good information here, including information about what options women have available to them if they do test positive.  Many women do choose to have a bilateral mastectomy and ooph, but not all do.  http://www.facingourrisk.org/

    Hope that helps!

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  • Mocity
    Mocity Member Posts: 451
    edited August 2008

    Hi there,

    I was dx with DCIS in my left breast in June 08.  I have now made the decision to get a bi-lateral mastectomy on Sept 17th.  I am 37 years old and my mom died of breast cancer at 38.  So based on this early dx and family history I think this is the decision for me.  I can't go through this worry year after year and am taking this DCIS dx as a huge warning sign.  I know it is hard because on one hand I think how lucky I am for the early (stage 0) dx compared to what others are going through.  Then on the other hard you are thinking... Holly ****, a bi-lateral mastectomy for Stage 0 cancer??

    However, my BS said it best... he said... "it is a very tough decision but probably the wisest".  Anyway, everyone has to make this decision for themselves and I am definately still struggling with it.

    Guess what???  All my family history and my BRAC testing came back yesterday as NEGATIVE.  I thought I would be positive 100%.  So my ovaries will stay where they are for now.

    You are in my thoughts!

    Cristl 

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  • smithlme
    smithlme Member Posts: 1,322
    edited August 2008

    Hi Mandy,

    I was diagnosed with IDC in March of last year and DCIS in March of this year. Both times I chose to have a mastectomy. I have since been diagnosed as BRCA 2+. If I would have known this last year, I would have had a bilateral mastectomy. I no longer trust my body and we have no idea what is firing off my genes. I was also at a higher risk for ovarian cancer so I had a hysterectomy/oophorectomy in June. www.facingourrisk.orgis a web site dedicated to BRCA issues.

    Get the facts, ask a lot of questions and choose what is best for you...

    Linda

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